critical care nurses' perceptions of end-of-life care

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Critical Care Nurses' Perceptions of End-of-LifeCare: Comparative 17-year DataNicole LamoreauxBrigham Young University

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Critical Care Nurses’ Perceptions of End-of-Life

Care: Comparative 17-Year Data

Nicole Lamoreaux

A thesis submitted to the faculty of Brigham Young University

in partial fulfillment of the requirements for the degree of

Master of Science

Renea L. Beckstrand, Chair Karlen E. (Beth) Luthy Janelle L. B. Macintosh

College of Nursing

Brigham Young University

June 2016

Copyright © 2016 Nicole Lamoreaux

All Rights Reserved

ABSTRACT

Critical Care Nurses’ Perceptions of End-of-Life Care: Comparative 17-Year Data

Nicole Lamoreaux College of Nursing, BYU

Master of Science

BACKGROUND: Nurses working in intensive care units (ICUs) frequently care for patients and their families at the end-of-life (EOL). Providing high quality EOL care is important for both patients and families, yet ICU nurses face many obstacles that hinder EOL care. Researchers have identified various ICU nurse-perceived obstacles, but no studies have been found addressing the progress that has been made over the last 17 years.

OBJECTIVE: To determine the most common and current obstacles in EOL care as perceived by ICU nurses and then to evaluate whether or not meaningful changes have occurred since data were first gathered in 1998.

METHODS: A quantitative-qualitative mixed methods design was used. A random, geographically dispersed sample of 2,000 members of the American Association of Critical-Care Nurses was surveyed.

RESULTS: Five obstacle items increased in mean score and rank as compared to 1999 data including: (1) family not understanding what the phrase “life-saving measures” really means; (2) providing life-saving measures at families’ requests despite patient’s advance directive listing no such care; (3) family not accepting patient’s poor prognosis; (4) family members fighting about use of life support; and, (5) not enough time to provide EOL care because the nurse is consumed with life-saving measures attempting to save the patient’s life. Five obstacle items decreased in mean score and rank compared to 1999 data including (1) physicians differing in opinion about care of the patient; (2) family and friends who continually call the nurse rather than calling the designated family member; (3) physicians who are evasive and avoid families; (4) nurses having to deal with angry families; and, (5) nurses not knowing their patient’s wishes regarding continuing with tests and treatments.

CONCLUSIONS: Obstacles in EOL care, as perceived by critical care nurses, still exist. Family-related obstacles have increased over time and may not be easily overcome as each family, dealing with a dying family member in an ICU, likely has never experienced a similar situation. Based on the current top five obstacles, recommendations for possible areas of focus may include (1) improved nursing assessment regarding the health literacy of families followed with directed, appropriate, and specific EOL information, (2) improved care coordination between physicians and other health care providers to facilitate sharing care plans, (3) advanced directives that are followed as written by patients, (4) designated family contact communicating with family and friends regarding patient information, and, finally, (5) earlier, transparent discussions of patient prognoses as disease processes advance and patient conditions deteriorate.

Keywords: obstacles, intensive care units, end-of-life care, critical-care nurse

ACKNOWLEDGEMENTS

I cannot begin to express my gratitude to Dr. Renea Beckstrand, Dr. Beth Luthy, and Dr.

Janelle Macintosh for their help and guidance in the completion of my thesis! I could not have

finished this thesis without their direction and expertise in both research and writing. High

quality end-of-life care is something I am very passionate about and I am beyond grateful to

Renea for approaching me about taking this topic on as my thesis. Her passion for research and

dedication to her students is amazing to me. Working beside her, both in the ICU and while

writing my thesis, has inspired me to be a better nurse and a better person. I am also grateful to

all of my professors and classmates in the BYU FNP program. I consider you all friends for life!

I have undoubtedly been blessed with the most incredible family and friends a girl could

ask for. I could not have completed this program or become the person I am without their

encouragement, examples, service, and love. Thank you Mom, Dad, KK, Rob, Bosty, Macabee,

Jonesers, Shleb, and Quisth for all of your love and support. I love you all so much!

TABLE OF CONTENTS

Abstract……………………………………………………………………………………ii

Acknowledgments………………………………………………………………………...iii

Table of Contents…………………………………………………………………………iv

Manuscript: Critical Care Nurses’ Perceptions of End-of-life Care: Comparative 17 year

Data………………………………………………………………………………………..1

Introduction………………………………………………………………………..1

Background…….…………….……………………………………………………1

Objectives………………………………………………………………………....3

Research Questions………………………………………………………………..3

Methods

Sample……………………………………………………………………..3

Design..……..……………………………………………………………..3

Instrument……..…………………………………………………………..3

Procedure……………………..…………………………………………...4

Data Analysis……….………………………………………………………...…..4

Results…………………………………………………………………………….5

Current Demographic Data……………………………………………….5

Current Obstacle Size Ratings……………………………………………5

Comparison Data………………………………………………………….6

Comparison of demographic data over time……………………...6

Comparison of obstacles mean scores and ranking over time……7

Comparison of statistical mean scores over time…………………8

Discussion…………………………………………………………………………8

Demographics……………………………………………………………..8

Families as Obstacles……………………………………………………...9

Top Five Obstacles………………………………………………………..9

Limitations……………….………………………………………………………11

Recommendations…..……………………………………………………………12

Conclusions………………………………………………………………………12

References…………………………………………………………..……………………13

Tables………………………………………………………………….…………………16

Table 1. Obstacle Item Size Mean as Reported by Critical-Care Nurses in

Regard to End-of-life Care……………………………………………………….16

Table 2. Demographics of Nurses………………………………………………..18

Table 3. Comparative Data of Obstacle Size Mean and Rank Over Three Time

Periods……………………………………………………………………………19

Table 4. Comparative Demographic Characteristics…………………………….20

Table 5. Facility Characteristics…………………………………………………21

Table 6. Statistically Significant Changes in Obstacle Mean Scores over Time..22

CRITICAL CARE NURSES’ PERCEPTIONS OF END-OF-LIFE CARE 1

Critical Care Nurses’ Perceptions of Families as Obstacles

to End-of-Life Care: Comparative 17 year Data

Critical care nurses care for dying patients on a daily basis. In the United States, annual

deaths for 2011 surpassed 2.4 million.1 Nearly 540,000 deaths2 occur in ICUs each year due to

more complex patients presenting with multiple diagnoses and poorer prognoses.3 Therefore,

providing high quality end-of-life (EOL) care to ICU patients and families is essential.4 ICU

nurses face many obstacles in providing quality EOL care.

Background

A search of the literature identified the most common obstacles, as perceived by critical

care nurses, since publication of the SUPPORT study in 1995.5

Obstacles

Several studies have identified common obstacles in EOL care as perceived by critical-

care nurses. In 1998, a pilot study was completed surveying a national random sample of 300

ICU nurses regarding obstacles to providing quality EOL care to dying patients.6 Researchers

concluded that nurses’ perceptions of EOL obstacles primarily dealt with patients’ families and

with physician behaviors.6 In a follow-up study with data gathered in 1999, the same researchers7

surveyed a larger national random sample of 1500 ICU nurses. Findings from the larger study

supported pilot data results in that the most commonly perceived obstacles were (1) physicians

differing in opinion about patient care, (2) family continually calling the nurse for updates, (3)

physicians’ evasive behaviors and avoidance of family, and (4) families not understanding the

term “life-saving measures” and with the associated implications.7

In 2006, a nationally representative sample of nurse and physician directors of 600 ICUs

was surveyed.8 These researchers found the largest perceived EOL obstacles were those


primarily relating to families, patients, or physicians.8 For families and patients, noted obstacles

were unrealistic expectations or inability [of patients] to participate in discussions. For those

obstacles related to physicians were insufficient training in communication regarding EOL issues

and inadequate communications between the ICU [physician] and patients/families about

appropriate goals. Obstacles related to institutional factors included poor environment and poor

staffing.

In 2008, investigators conducted a literature review comprised of 13 quantitative and 9

qualitative research studies.9 Identified obstacles in providing high-quality EOL nursing care

were inadequate patient pain relief, poor coping mechanisms of nursing staff, lack of EOL

education and/or experience among physicians and nurses, heavy patient loads, and unrealistic

expectations of families.9

In 2010, a replication of an earlier study7 surveyed 180 nurses working in critical care

units in a Midwestern urban trauma center.10 Similar to earlier published results, these

researchers found a lack of direct and consistent information to families, issues with physicians,

inadequate EOL education for nurses, and unclear advanced directives as commonly perceived

obstacles.10

In another report of a multidisciplinary sample, including ICU nurses, obstacle items

were coded into four domains including patient and family factors, institutional factors, clinician

factors, and education/training factors.11 The most consistently reported obstacles perceived by

ICU nurses were language barriers between nurses and families, patients’ inability to participate

in making EOL decisions, lack of designated palliative care service, poor continuity of care for

physicians and nurses, inadequate time to complete all nursing duties, apprehension of


withdrawing care due to potential legal liability, and inadequate physician training and

communication skills.11

In summary, over the last 17 years, researchers have determined that EOL care obstacles,

as identified by critical-care nurses, exist in ICUs and impede delivery of quality care to dying

patients. What is unknown is if mean obstacles scores have changed over time.

Objectives

Although studies have been conducted to identify perceived obstacles by ICU nurses

providing EOL care, no studies were found addressing the progress that has been made over the

last 17 years. The purposes of this study were to determine the most common current obstacles in

EOL care, as perceived by ICU nurses, and then to evaluate whether or not meaningful changes

have occurred since data were first gathered in 1998.

Research Questions

1. Which listed items do ICU nurses perceive as being the largest obstacles in providing

EOL care to dying patients?

2. Have critical care nurses’ perceptions of EOL obstacles changed over the last 17 years?

Methods

Sample

A geographically-dispersed sample of 2,000 members of the American Association of

Critical-Care Nurses (AACN) was surveyed. Subjects were randomly selected from the 104,000

members of AACN. To be eligible for participation, subjects needed to live in the U.S., read

English, and have cared for at least one ICU patient at the EOL.


Design

A quantitative-qualitative mixed methods design was used for this study. Analysis

presented here covers quantitative obstacle data only. Published data from two previous studies

were used for comparison.6-7

Instrument

The questionnaire, entitled the “National Survey of Critical Care Nurses’ Perceptions of

End-of-life Care” was first developed in 1998 and then minimally adapted in 2014. The final

questionnaire consisted of 72 items including 29 obstacle items (four more than the pilot due to

suggestions from nurses), 25 supportive behavior items, and 1 open-ended item for nurses to add

any additional obstacle item that the survey did not cover. Three other open-ended items were

also included. In addition, nurses were asked to complete 14 demographic items.

Cronbach α for the 29 obstacle size items was 0.89 suggesting that scale score was

internally consistent. This is the same Cronbach α score for obstacle size items as was obtained

in the obstacle size data gathered in 19997 confirming that the instrument, for obstacle items, was

consistent over time. Matching reliability scores were expected given that the instruments, for

the list of obstacle items, were identical in both studies (collected in 19997 and 2015).

Procedure

Institutional review board approval was obtained. A mailing list for subjects was

purchased from AACN. Subjects received a packet including a cover letter explaining the study,

a three-page questionnaire, and a pre-addressed postage-paid return envelope. Subjects were

asked to self-administer and return the questionnaire upon completion. For the first mailing,

packets were sent to the subjects’ home addresses, with a reminder postcard sent three months

later to non-responders. An additional second complete packet was sent to non-responders six


weeks after mailing of the postcard reminder. Consent to participate was implied upon return of

the questionnaire.

Data Analysis

All 509 responses were entered into an SPSS® version 23 database (SPSS® Inc., 2015).12

The accuracy of the entered data was checked by two people. Data were examined for missing

values and univariate outliers using appropriate descriptive statistics and figures before further

analyses were performed. Missing data were found to be minimal (less than two percent) for

most variables. Descriptive statistics were calculated. Independent t-tests were conducted to

assess differences in means between 1999 data7 and current means for obstacle size. Frequencies,

measures of central tendency and dispersion, and reliability statistics were calculated for all

obstacle items. Obstacle items were then ranked on the basis of their mean scores to determine

which items were perceived to be the largest obstacles (see Table 1).

Results

Current Demographic Data

Of the 2,000 potential respondents, 604 questionnaires were returned with 95 of those

eliminated from the study sample because either the questionnaire could not be delivered (n =

30) or because subjects reported they were ineligible to participate (n = 65). Usable responses

were received from 509 of the 1905 eligible respondents for a response rate of 26.7%.13

Mean age of nurses was 45.4 years (SD = 11.9). Nurses reported a mean of 18 years (SD

= 11.8) working as an RN and a mean of 15.1 years (SD = 10.7) working in an ICU setting. More

than 65% of these nurses reported having provided care for 30 or more ICU patients at the EOL

with only 1.6% reporting caring for less than 5 dying ICU patients. Additional demographic data

is represented in Table 2.


Current Obstacle Size Ratings

Nurses rated a provided list of 29 obstacle items on a scale of 0 (not an obstacle) to 5

(extremely large obstacle). Mean size scores for obstacle items ranged from a high of 4.05 to a

low of 0.96. The obstacle items receiving the highest mean scores for size (perceived largest

obstacle) were, family members not understanding what “life-saving measures” really means (M

= 4.05, SD 0.97), multiple physicians, for one patient, who differ in opinion regarding direction

of care (M = 3.94, SD = 1.13), and employing life sustaining measures, at the families’ request,

even though the patient signed advanced directives requesting no such treatments (M = 3.92, SD

= 1.23) (see Table 1). These top three items were noted to currently be large obstacles in

providing EOL care to dying ICU patients.

Four other top 10 obstacle items related to issues with patient’s families including, family

and friends continually calling the nurse for updates (M = 3.89, SD 1.06), families not accepting

the patient’s prognosis (M = 3.85, SD = 0.96), nurses having to deal with angry family members

(M = 3.81, SD = 1.08) and, intra-family fighting regarding whether or not to continue or stop life

support (M = 3.65, SD = 1.08).

The lowest scoring obstacles (perceived smallest obstacles) were related to unit visiting

hours that are too restrictive (M = 0.96, SD = 1.40) and continuing to provide advanced

treatments to dying patients because of [perceived] financial benefit to the hospital (M = 1.91,

SD = 1.85).

Comparison Data

Overall, 19 of the 29 obstacles rankedrlb5, at some time, in the top 15 items over the

three data collection periods: 1998,6 1999,7 and 2015 (see Table 3). Four top-ranking obstacle

items were new to the 1999 questionnaire and remained part of the 2015 questionnaire. Because


the 1998 and 1999 data were collected relatively closely together in time and because four items

were added to the 1999 questionnaire due to nurses’ suggestions from the 1998 study, the

following major comparisons will primarily be made between 1999 and currently gathered data.

Comparison of demographic data over time. For 1999 and 2015 data respectively,

mean age in years of subjects was similar (M = 45.1 vs. 45.4), as was mean years’ experience in

ICU (M = 15.4 years vs. 15.1 years) and, whether the nurse was currently CCRN certified (M =

87.6% vs. 88.7%) (see Table 4). Differing demographic data from 1999 to 2015 included the

number of subjects who stated they were male increasing from 6.7% to 13.1% and whether the

nurse were ever certified as a CCRN (73.5% vs. 79.1%). Differences in education between times

were also noted where the percentage of diploma nurses decreased from 1999 levels to 2015

levels respectively (13.9% down to 3%) and percentage of associate degrees decreased from

19.2% down to 13%. Percentage of critical-care nurses with bachelor degrees increased over

time respectively (51.3% up to 67.5%) as did those with master degrees (14.1% up to 14.7%).

Individuals working in staff and charge nurse positions remained relatively stable

between 1999 and current data while the percentage of clinical nurse specialists decreased

somewhat over time. Nurses participating at both time points reported working similar numbers

of hours. Facility characteristics described by both samples are reported in Table 5.

Comparison of obstacles mean scores and ranking over time. Five items in the current

obstacle top-10 list increased in mean score as compared to 1999 data. Items that increased, over

time, in mean score and rank (denoted by rank #) included the current #1 highest ranked item,

family not understanding what the phrase “life-saving measures” really means (in 1999 was #4);

current #3 item, providing life-saving measures at families’ request despite patient AD

requesting no such care (in 1999 was #6); current #5 item, family not accepting patient’s poor


prognosis (in 1999 was #8); current #8 item, family members fighting about use of life support

(in 1999 was #12); and current #9 item, not enough time to provide EOL care because nurse is

consumed with life-saving measures (in 1999 was #11).

Five items in the current obstacle top-10 list decreased in mean score as compared to

1999 data. Those items that decreased in mean score from 1999 to 2015 data collection included

current #2 item, physicians differing in opinion about care of the patient (in 1999 was #1);

current #4 item, family and friends who continually call the nurse rather than calling the

designated family member (in 1999 was #3); current #6 item, physicians who are evasive and

avoid families (in 1999 was #3); current #7 item, nurse having to deal with angry family (in 1999

was #5); and current #10 item, nurse not knowing patient’s wishes regarding continuing with

tests and treatments (in 1999 was #9).

Comparison of statistical mean scores over time. Data were analyzed to compare mean

scores between 1999 and current data. Twelve obstacle items were statistically and significantly

different between data acquisition times. Three obstacle item mean scores increased significantly

from 1999 to 2015 (see Table 6). Nine obstacle item mean scores decreased significantly from

1999 to 2015. It is important to note that statistical significance does not necessary denote

clinical significance.

Discussion

Demographics

Changes in demographic data over time reflect the national trend of increases of males

into nursing14 and the focus on nursing degrees beyond diploma and associate. A relative steady

state was noted in the mean age of bedside nurses and the average number of years working as

RNs.


The mean score ranges for items in the current obstacle size section were similar to those

observed at 1999, suggesting that serious deficiencies in EOL care continue to exist in ICUs

across the nation. That most of this sample of nurses reported having cared for 30 or more dying

patients shows that these nurses were highly experience in EOL care. A high level of experience

is important to note as the highest ranked item was perceived only to be large compared to the

highest possibility (extremely large) suggesting that these experienced nurses may have found

ways to work around common EOL obstacles. Another possibility could be that this sample of

nurses considered these obstacles so common in occurrence that the obstacles were considered a

routine part of EOL care with dying patients and thus were not rated as extremely large.

While some obstacle item means differed significantly over time, true judgment of

clinical significance is subjective at best. Does it really matter, at the bedside, if a particular

obstacle item increased significantly by mean score? What is probably more important is the type

of obstacle item that significantly increased and the comparative ranking of top obstacle items.

For example, two of the three statistically increasing obstacle means scores related to issue with

families.

Families as Obstacles

Interestingly, issues with families seem to have increased over the last 17 years in that six

of the top ten currently rated obstacles identified issues with families as obstacles—an increase

from data gathered 17 years ago. It is possible that as other obstacles, not related to families, are

addressed and improved upon, family issues will continue to increase over time. Increases in

obstacle items related to families may be due to the nature of death and dying. For critical care

nurses, dying patient events happen every day; however, for families, that dying patient may be

their first ICU death experience therefore, typical responses to that death event (anger, confusion,


miscommunication, and unsupported hopefulness) occur with each family placed in a similar

position.

Top Five Obstacles

The current top five reported obstacles have consistently been reported in the top eight

obstacles over the past 17 years indicating that little has been done to reduce top obstacles in

EOL care. Discussion of the top five obstacles follows.

The current top obstacle, where families misunderstand medical terminology, is an

example of deficient health literacy. The Institute of Medicine report on health literacy defined

health literacy as, “the degree to which individuals have the capacity to obtain, process, and

understand basic health information and services needed to make appropriate health decisions.”15

Older adults are vulnerable for health literacy issues even as these adults develop more chronic

illnesses using more medical services than other population ages.15 Critical care nurses need to

assess the health literacy levels of their patients’ families and assure that information regarding

EOL issues is clearly matched to the families’ literacy level. As nurses definitively explain that

endotracheal tubes, ventilators, small bowel feeding tubes, and vasoactive medications may all

be forms of “lifesaving measures,” families may more clearly understand the amount of actual

support being given to their family member to sustain life. Nursing education of families

regarding each care being provided is essential in high quality care.16

The second top obstacle, physician disagreement about the direction of patient care, may

be directly impacted by the training and experience of each physician.17 It is imperative that

physicians reach a consensus on patients’ prognoses to provide the best information for the

families and care for patients.16


Advanced directives play an important role in fulfilling patient wishes regarding EOL

care. Unfortunately, when patients are unable to speak or explain their completed advance

directives, families, nurses, or physicians may misinterpret the patient’s wishes and an advanced

directive may not be followed.18 As the third highest obstacle, measures need to be implemented

where advanced directives are followed, as specified by individual patients, so that EOL

decisions are not changed by family members when critical illness ensues.

Nurses need time to provide high-quality EOL care. When nurses are called away from

the patient multiple times throughout the shift to talk to various family members and friends of

the patient, the quality of provided care suffers (#4 obstacle). By identifying a designated family

spokesperson, who can get updates from the nurse and disseminate that information to friends

and family, more of nurses’ time can be spent caring for patients.19

Families not accepting a patient’s poor prognosis until the time of death can be a

frustrating obstacle, yet families often do not have the needed information to understand, let

alone accept poor prognoses (#5 top obstacle). Physicians often wait to discuss the prognosis

with family until a disease process is so advanced or a patient’s condition so deteriorated that

families do not have time to consider or make difficult decisions for the patient.20 Earlier

communication regarding all possible eventualities may lead to earlier decisions for comfort care

over prolonged futile treatments.

Limitations

Only members of AACN were sampled. Critical care nurses who are not members of

AACN may have rated obstacle items differently than this sample of nurses. In addition, non-

responders many have also scored obstacles differently.


While it has been noted that surveys of health care professionals have generally low

response rates, the low response rates have continued to decrease over time.21 Response rate for

this study was well below the response rates of 1999 data acquisition (61%) and the 1998 pilot

study (69%). While low, our response rate was almost identical to another national survey of

registered nurses. 22 In a U.S. Department of Health and Human Services survey of registered

nurses using a multimodal approach, overall response rate for paper returns was 27% (additional

online returns were 24% while phone completion was 10%.)22 The lower response rate could

reflect the absence of a monetary incentive given in 1999 (a $2 bill) but not provided at 2015

data collection, the lack of three complete follow-up mailings, or could reflect the feeling of

“survey fatigue.” Survey fatigue is common when a potential research subject is inundated with

invitations to complete surveys leading to an adverse effect on response rates.23

Recommendations

Improving EOL care for dying ICU patients remains a high priority in nursing. Optimal

EOL care may not be possible for all patients and families,24 but identifying current nurse-

perceived obstacles is essential in providing quality EOL care for as many patients and families

as possible. As obstacles are identified, focused effort can be aimed at developing meaningful

interventions to improve EOL care. Based on the current top five obstacles, recommendations for

possible areas of focus may include (1) improved nursing assessment regarding the health

literacy of families followed with directed, appropriate, and specific EOL information, (2)

improved care coordination between physicians and other health care providers to facilitate

sharing care plans, (3) advanced directives that are followed as written by patients, (4)

designated family contact communicating with family and friends regarding patient information,


and, finally, (5) earlier, transparent discussions of patient prognoses as disease processes advance

and patient conditions deteriorate.

Conclusion

Obstacles, as perceived by critical-care nurses, continue to exist and impede quality

delivery of EOL care. Obstacles related to issues with families seem to have increased slightly

over time. These family issues may be inherent with the situation of dying in ICUs and may not

be easily overcome as each EOL event is new to that family but familiar to ICU nurses. In

general, implementing strategies which support clearer communication, guide all care toward

one goal, and allow nurses to be at the bedside caring for dying patients are ultimately the best

ways to improve care for dying critically ill patients.


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Table 1 Obstacle Item Size by Mean as Reported by Critical-Care Nurses in Regard to End-of-Life Care Obstacle M SD na 1. Family members not understanding what “life-saving measures” really means. 4.05 0.97 502 2. Multiple physicians, involved with one patient, who differ in opinion about the direction care should go. 3.94 1.13 506 3. Employing life sustaining measures at the families’ request even though the patient had signed advanced directives requesting no 3.92 1.23 507 such treatment. 4. Family and friends who continually call the nurse wanting updateson the patient’s condition rather than calling the 3.89 1.06 504 designated family member. 5. Families not accepting what the physician is telling them about the patient’s prognosis. 3.85 0.96 506 6. Physicians who are evasive and avoid having conversations with Family members. 3.83 1.13 505 7. The nurse having to deal with angry family members. 3.81 1.08 502 8. Intra-family fighting about whether to continue or stop life support. 3.65 1.08 502 9. Not enough time to provide quality end-of-life care because the nurse is consumed with activities that are trying to save the 3.59 1.08 505 patient’s life. 10. Nurse not knowing the patient’s wishes regarding continuing with treatments and tests because of the inability to communicate. 3.58 1.18 502 11. Physicians who won’t allow the patient to die from the disease Process. 3.50 1.36 502 12. Continuing treatments for a dying patient even though the treatments cause the patient pain or discomfort. 3.44 1.30 503 13. Physicians who are overly optimistic to the family about the patient surviving. 3.38 1.21 504 14. When the nurses’ opinion about the direction patient care should go is not requested, not valued, or not considered. 3.23 1.40 506


Table 1 Continued Obstacle Item Size by Mean Obstacle M SD na 15. The nurse having to deal with distraught family members while still providing care for the patient. 3.23 1.15 505 16. Being called away from the patient and family because of the need to help with a new admit or help another nurse care for 3.20 1.22 501 his/her cases. 17. Continuing intensive care for a patient with a poor prognosis Because of the real or imagined threat of future legal action by the 3.13 1.49 505 patient’s family. 18. The patient having pain that is difficult to control or alleviate. 2.71 1.33 505 19. The family, for whatever reason, is not with the patient when 2.61 1.21 506 he or she is dying. 20. Lack of nursing education and training regarding family grieving and quality end-of-life care. 2.60 1.39 504 21. Poor design of units which do not allow for privacy of dying patients or grieving family members. 2.54 1.62 508 22. The nurse knowing about the patient’s poor prognosis before the family is to the prognosis. 2.46 1.62 504 23. Dealing with the cultural differences that families employ in 2.42 1.21 507 grieving for their dying family member. 24. The unavailability of an ethics board or committee to review 2.40 1.69 500 difficult patient cases. 25. Pressure to limit family grieving after the patient’s death to 2.64 1.59 506 accommodate a new admit to that room. 26. Unit visiting hours that are too liberal. 2.29 1.77 502 27. No available support person for the family such as a social 1.98 1.44 507 worker or religious leader. 28. Continuing to provide advanced treatments to dying patients 1.91 1.85 497 because of financial benefits to the hospital. 29. Unit visiting hours that are too restrictive. 0.96 1.40 506 na = number of nurses rating this item.


Table 2

Demographics of Nurses (N = 509).

Characteristics Sex Female Male

n % 438 (86.9) 66 (13.1)

Age

M SD Range 45.4 11.9

24 - 73

Years as RN

18 11.8 1.5 - 50 Years in ICU 15.1 10.7 1 - 48 Hours worked/week 36 8.4 8 - 76 Number of beds in ICU

19.4 8.7

4 - 56

Dying patients cared for: >30 21 - 30 11 - 20 5 - 10 <5

%

65.4 12.7 13.7 6.6 1.6

Highest degree: Diploma Associate Bachelor Master Doctoral

% 3

13.2 68

15.2 0.6

Ever certified as CCRN Yes No

n % 400 (79.1) 106 (20.9)

Currently CCRN Yes No

n % 307 (88.7) 39 (11.3)

Years as CCRN 8.9 8.3 0.5 - 36 Practice area: Direct Care/Bedside Nurse Staff/Charge Nurse Clinical Nurse Specialist Other (Manager, Educator, etc.)

%

53.2 41.5

0.8 4.5


Table 3 Comparative data of obstacle size mean and rank over 3 time periods


Table 4 Comparative Demographic Characteristics

Characteristic 19997 (SD) 2015 (SD) Age mean in years 45.1 45.4 Gender Female 799 (92.5%) 438 (86.2%) Male 57 (6.6%) 65 (12.8%) Highest Degree Diploma 120 (13.9%) 15 (3.0%) Associate 166 (19.2%) 64 (13%) Bachelors 443 (51.3%) 343 (67.5%) Masters 121 (14%) 75 (14.7%) Doctoral 7 (.8%) 3 (.6%) Other 2 (.4%) Years as RN Mean (SD) 19.0 (8.2) 18.0 (11.9) Years in ICU Mean (SD) 15.4 (7.0) 15.1 (10.7) Position Staff Nurse 450 (52.1%) 268 (52.8%) Charge Nurse 323 (37.4%) 210 (41.3%) Clinical Nurse Specialist 39 (4.5%) 4 (.8%) Educator/Manager 13 (2.6%) Other 48 (5.6%) 10 (2.0%) Ever Certified CCRN Yes 630 (72.9%) 400 (78.7%) No 228 (26.4%) 105 (20.7%) Missing 6 (.7%) 3 (.6%) Currently Certified CCRN Yes 591 (68.4%) 307 (60.4%) No 83 (9.6%) 39 (7.7%) Missing 190 (22.0%) 162 (31.9%) Years CCRN 9.1 (4.8) 8.9 (8.3) Hours Worked per Week 36.1 (9.8) 36.0 (8.4) Number of Patient Deaths < 5 7 (.8%) 8 (1.6%) 5 - 10 27 (3.1%) 33 (6.5%) 11 - 20 74 (8.6%) 69 (13.6%) 21 - 30 85 (9.8%) 64 (12.6%) > 30 586 (67.8%) 328 (64.6%) Other 77 (8.9%)


Table 5 Facility Characteristics

Characteristic 1999 2015 Type of Facility Community Hosp. non-profit 512 (59.3%) 290 (57.1%) Community Hosp. for-profit 126 (14.6%) 71 (14.0%) University Medical Center 133 (15.4%) 104 (20.5%) Federal Hospital 29 (3.4%) 14 (2.8%) State Hospital 6 (.7%) 5 (1.0%) County Hospital 22 (2.5%) 15 (3.0%) Military Hospital 12 (1.4%) 5 (1.0%) Other 19 (2.2%) 2 (.4%) Type of ICU ICU 102 (11.8%) 98 (19.3%) CCU 75 (8.7%) 28 (5.5%) Combined ICU/CCU 345 (39.9%) 109 (21.5%) MICU 41 (4.7%) 74 (14.6%) SICU 56 (6.5%) 37 (7.3%) Resp. ICU 1 (.1%) 1 (.2%) Neuro ICU 20 (2.3%) 25 (4.9%) Shock/Trauma Unit 25 (2.9%) 40 (7.9%) Cardio/Surgical ICU 126 (14.6%) 82 (16.1%) Other 11 (2.2%) Unit Beds Mean (SD) 15.4 (8.1) 19.5 (8.8)


Table 6

Statistically Significant Changes in Obstacle Mean Scores over Time*

Obstacle Item

1999 2015 Obstacle Item Mean Score Increased Significantly

+/- Mean (SD) Mean (SD)

p d

Family not accepting what physician tells them about prognosis.

+ 3.6 (1.0) 3.9 (1.0) 0.000* 0.233

Visiting hours that are too liberal + 2.1 (1.7) 2.3 (1.8) 0.019* 0.128 Family not understanding what “life-

saving” measures mean + 3.9 (1.0) 4.0 (1.0) 0.024* 0.123

Obstacle Item Mean Score Decreased Significantly

+/- Mean (SD) Mean (SD)

p d

Poor design of units which no not allow for privacy

- 2.9 (1.6) 2.5 (1.6) 0.000* 0.190

Visiting hours too restrictive - 1.6 (1.7) 1.0 (1.4) 0.000* 0.443 Patient having pain that is difficulty to

control - 3.0 (1.3) 2.7 (1.3) 0.001* 0.184

No Social Work or Religious - 2.2 (1.5) 2.0 (1.4) 0.016* 0.130 Continued treatments for dying patient

even though treatments cause pain or discomfort

- 3.6 (1.2) 3.4 (1.3) 0.042* 0.111

Family and friends who continually call the nurse for updates

- 4.0 (1.0) 3.9 (1.1) 0.026* 0.142

Physicians who won’t allow the patient to die from the disease process

- 3.7 (1.2 ) 3.5 (1.4) 0.002* 0.201

Physicians who avoid family members - 4.0 (1.1) 3.8 (1.1) 0.006* 0.171 Nurse opinion is not valued - 3.5 (1.3) 3.2 (1.4) 0.003* 0.159

*Statistical significance does not denote clinical significance.

critical care nurses' perceptions of end-of-life care

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